Emotion Regulation Flexibility and Electronic Patient-Reported Outcomes: A Framework for Understanding Symptoms and Affect Dynamics in Pediatric Psycho-Oncology

Simple Summary The individual's ability to conceive and regulate the broad spectrum of their human emotions is closely linked to their mental health. The implications of a serious disease such as cancer represent an extraordinary burden to these internal coping mechanisms, especially in the case of young patients. Regarding their well-being and support, it is therefore of particular interest for caregivers to be able to follow the dynamics of the patient's emotional world and perceptions. Technical progress enables new possibilities for data collection through tools for digital patient self-reports while simultaneously creating new challenges. Within the scope of this article, we provide an overview of the literature on this topic, outlining the current strengths and weaknesses and possible perspectives on digital aids, especially in terms of capturing the flexibility, fluctuations and early detection of symptom changes. Emotion dysregulation is regarded as a driving mechanism for the development of mental health problems and psychopathology. The role of emotion regulation (ER) in the management of cancer distress and quality of life (QoL) has recently been recognized in psycho-oncology. The latest technological advances afford ways to assess ER, affective experiences and QoL in child, adolescent and young adult (CAYA) cancer patients through electronic patient-reported outcomes (ePRO) in their daily environment in real-time. Such tools facilitate ways to study the dynamics of affect and the flexibility of ER. However, technological advancement is not risk-free. We critically review the literature on ePRO in cancer existing models of ER in pediatric psycho-oncology and analyze strength, weaknesses, opportunities and threats of ePRO with a focus on CAYA cancer research and care. Supported by personal study-based experiences, this narrative review serves as a foundation to propose a novel methodological and metatheoretical framework based on: (a) an extended notion of ER, which includes its dynamic, adaptive and flexible nature and focuses on processes and conditions rather than fixed categorical strategies; (b) ePRO as a means to measure emotion regulation flexibility and affect dynamics; (c) identifying early warning signals for symptom change via ePRO and building forecasting models using dynamical systems theory.

Automated summary

The ability of individuals to regulate their emotions is closely tied to mental health, and serious illnesses like cancer pose a significant burden on these coping mechanisms, especially for young patients. Understanding the emotional world and perceptions of patients is important for their well-being and support, and technological advancements provide new opportunities for data collection. This article provides an overview of current strengths and weaknesses in digital aids for capturing emotional dynamics and symptom changes in cancer patients.